kayjay Posted December 12, 2009 Report Share Posted December 12, 2009 My hr really varies from 40's to 210. I don't think this is typical from other's posts. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted December 12, 2009 Report Share Posted December 12, 2009 Is this due to changes in postural positions or activities, or just when you're sitting? That's a big range! Quote Link to comment Share on other sites More sharing options...
kayjay Posted December 12, 2009 Report Share Posted December 12, 2009 Is this due to changes in postural positions or activities, or just when you're sitting? That's a big range!yesterday I felt very sleepy during my yoga class- I kept yawning. My Hr kept bopping down to the 40's. It was 202 yesterday when I filled my dog's water dish. It does not stay high - i think it like a fluttering- but it will stay too low. I am hoping to talk my GP into a holter monitor ( now that I am on meds) to see what is going on. Maybe I am on the wrong meds or doasages.It does feel horrible though last night I drank a big glass or red wine with my dinner just to soothe myself... slept like a baby with no Klonopin . Quote Link to comment Share on other sites More sharing options...
prettyinpink Posted December 12, 2009 Author Report Share Posted December 12, 2009 typically my hr is 100-120 resting and 140-180 standing. Dr.grubb said that the IST is what keeps my hr still so high at rest and the pots is why it rises >30bpm with standing as well as causing the other pots symptoms i have. lauralulu- do you have a cardio to take all these results to? do you have other symptoms?Hi- no I don't have any sort of specialist at the moment. I've been 'ill' for approx 8 years, with some times being better than others. The most apparent symptoms I've had are constant thirst, overactive bladder (which don't really go well together, haha!) and fatigue. Period problems (irregular, heavy and painful) and more recently feelings of weakness, shakyness and breathlessness. I have many other things too that I've had for years, such as neck aches, back aches, headaches, migraine 'auras' and forgetfulness. I'm only just starting to realise how all of these seemingly unrelated symptoms could in fact be linked together... I'm hoping my GP will be sympathetic and refer me on to someone who could give me the right sort of tests.Have you ever been tested for diabetes insipidus? The constant thirst and overactive bladder make me wonder. Or even regular Diabetes? The diabetes insipidus is just people who lack the hormone that makes you retain water so you take the hormone in pill form. Are there any POTS specialists around you? Its crazy when you start to realize all the symptoms pots can cause. I didn't have full blown POTS until a few months ago but i think i had beginning symptoms long before that. I ran track and cross country and i remember reading about running with your hr in the 60-85% of your max zone and how you can't keep you hr in the anaerobic zone for longer then a few minutes yet, i'd run entire 5k races with my hr at or nearly at its maximum. Quote Link to comment Share on other sites More sharing options...
lauralulu Posted December 13, 2009 Report Share Posted December 13, 2009 Have you ever been tested for diabetes insipidus? The constant thirst and overactive bladder make me wonder. Or even regular Diabetes? The diabetes insipidus is just people who lack the hormone that makes you retain water so you take the hormone in pill form. Are there any POTS specialists around you? Its crazy when you start to realize all the symptoms pots can cause. I didn't have full blown POTS until a few months ago but i think i had beginning symptoms long before that. I ran track and cross country and i remember reading about running with your hr in the 60-85% of your max zone and how you can't keep you hr in the anaerobic zone for longer then a few minutes yet, i'd run entire 5k races with my hr at or nearly at its maximum.Wow, that's crazy! I haven't had any 'full blown' symptoms until recently but I was going out a lot, working hard, not getting much rest, and now I feel pretty much dreadful! I haven't been tested for DI but have heard about it and believe it or not, I asked my urologist if they could test me for it. He said no- because 'it is rare'. Yes, that's the kind of 'health care' I am putting up with here!! Quote Link to comment Share on other sites More sharing options...
potsgirl Posted December 13, 2009 Report Share Posted December 13, 2009 I think a Holter monitor is a great idea. It almost sounds like your heart is going into atrial fibrillation. Have you been checked for that before? I had it, and took Coumadin to even out my HR. Felt much better after the initial phase of getting onto the drug. Let us know....cheers,jana Quote Link to comment Share on other sites More sharing options...
flop Posted December 13, 2009 Report Share Posted December 13, 2009 Coumadin (Warfarin) is prescribed to people in atrial fibrillation to prevent blood clots forming in the heart. It is usually prescribed along with a drug to either control the rate of the AF (usually digoxin) or a drug to try to keep the heart in sinus rhythm.Coumadin blocks the action of vitamin K and interupts the normal clotting mechanism of the blood so can be used to prevent and treat blood clots.Flop Quote Link to comment Share on other sites More sharing options...
prettyinpink Posted December 14, 2009 Author Report Share Posted December 14, 2009 Flop- I'm sooooooooooooo jealous that you have access to Ivabradine. This medicine is not FDA approved/available in the US but I've heard wonderful things about it. I've had a terrible time getting my heart rate down. Beta Blockers lower my blood pressure too much although I just started a new one hoping its different. Ivabradine is the only medicine out there that specifically targets the sinus node and lowers heart rate without any effect on blood pressure. I wish it was available in the us. Quote Link to comment Share on other sites More sharing options...
flop Posted December 14, 2009 Report Share Posted December 14, 2009 Before I was able to go in Ivabradine I used to take tiny doses of a beta-blocker called Bisoprolol. I started on the dose used for heart failure 1.25mg once a day and over 2 years gradually worked up to 2.5mg twice a day. That was still a smaller dose than is used to treat high BP which would be 10mg. The bisoprolol actually worked very well for me and if I only had POTS I would probably have stayed on it. My problem is that I also have severe allergies and we think that the beta-blocker might have been making the allergies worse. I am currently having injection desensitisation treatment and in the UK you are not allowed allergy injections if you are on beta-blockers - that was my reason to persuade my doctor to let me try Ivabradine.Hopefully the FDA will assess Ivabradine and it will eventually become available in the US.Flop Quote Link to comment Share on other sites More sharing options...
potsgirl Posted December 14, 2009 Report Share Posted December 14, 2009 You're right, Flop, I also took Coreg with the Coumadin. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted December 15, 2009 Report Share Posted December 15, 2009 I too have a broad rangelaying down: 40-60sitting: 65-90standing: 100-165 Quote Link to comment Share on other sites More sharing options...
Nikki Posted December 15, 2009 Report Share Posted December 15, 2009 Laying down it can be anywhere from 65-99.Sitting up is basically the same as laying for me, usually.Standing is usually around 112.Mine fluctuates a lot though, as does my blood pressure. A few days ago I was sitting and felt my heart racing and it was around 135. The highest was on the tilt table and that was 180 beats per minute. Quote Link to comment Share on other sites More sharing options...
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